I have no problem with the test except that patients often think the ratio has meaning.

Back in 1998, when I was diagnosed with multiple myeloma, there was an older test for light chains, but it wasn't usefully accurate. I took it regularly and charted its results, but doing so was more for curiosity than for practical application.

Every perfect plasma cell has attached to it two light chains. I find the pictures don't help a lot, but I'll add one (above). The light chains are called Bence-Jones proteins after being discovered many years ago by a doctor of that name.

Usually, a myeloma patient will find in his blood both types of light chains, with one abnormally high: kappa or lambda (don't get frightened by the mathematical-sounding names: they happen to be the initials of the people who discovered them, K and L). They tend to break off the plasma cell and circulate. The number of them in the blood is a rough measure of the infiltration of the bone marrow by myeloma. I think of the measurement as a poor-person's bone marrow biopsy: it's as close as we get to measuring something called "tumor burden" in other cancers. Some of us, like me, have no other way of measuring what the cancer is doing. Others, the true non-secreters, don't even have light chains and must rely on biopsies.

The problem with measuring light chains accurately is that they are stunningly small. Their weight is given in Daltons, which, if you didn't know, is defined as one twelfth of the rest mass of an unbound neutral atom of carbon-12 in its nuclear and electronic ground state, and has a value of 1.660538921(73)×10−27 kg. Light chains of type lambda are heavier (bigger) than of type kappa, which is why people whose type is lambda may have more kidney problems than kappas. The lambdas are more likely to clog the kidneys (drink lots of water).

A light chain is a VERY small thing.

Then two or three Australian scientists got an idea. After looking at the inaccuracy data of the old test, they thought they discovered two things. First, if the measurements of kappa and lambda were not correct, at least they were incorrect in the same way. That is, both measurements were either too high or too low, never one high and the other low. So they reasoned that if they calculated the ratio between the two types, the result would be accurate and wipe out the error. They even claimed the ratio to be predictive of future relapse. That's how we got the ratio: to compensate for defects in the original test.

By the time I got one of the authors on the phone, California to Australia, they had recanted on the ratio and its predictive value entirely. Ratio? What ratio? What it actually did was magnify the difference between kappa and lambda so that an observer wouldn't miss the drop in the non-dominant type, but that turned out to be relatively meaningless therapeutically. If you are type kappa, for example, it doesn't matter if the lambda drops and the ratio increases: treatment will be the same.

If you go to the Binding Site, who owns the test, here's what you'll find about the ratio:

"The serum free light chain ratio is a strong indicator of monoclonality and is valuable for distinguishing monoclonal from polyclonal diseases. "

Actually, the kappa and lambda measurements tell us that already.

Now to be fair, there are a few references to the ratio on the Binding Site, but if one looks further, one can find this from someone worth listening to, Sundar Jagannath:

"One third of patients with monoclonal gammopathy of undetermined significance have an abnormal free light chain ratio, and these patients harbor a greater risk of progression to plasma cell dyscrasia. For monitoring response to therapy, the international uniform response criteria define a normal free light chain ratio as an essential element of the "stringent complete response" category."

So, if you are MGUS, and the ratio moves but the k/l levels are still normal, perhaps it is the beginning of progression. I think. In any case, CR means a normal ratio in addition to normal levels of kappa and lambda, which, of course, a result we would expect.

Saturday, June 30, 2012

After the allogeneic transplant was mightily intensified by an infusion of donor lymphocytes (my donor gave a second time for the DLI!), my old blood and marrow were gone. What I have now grew from my donor's cells, giving a whole new meaning to the farmer's tomato-adoring phrase, "home growner." I can no longer say things such as "my donor is recoloring my hair" because my actual donor isn't changing my hair: she's a resident physician in a hospital. So why is my hair lightening for summer? It's not as if my hair fell out and came back a different color, which happens all the time with chemotherapy: the color, now a golden brown, evolved over weeks.

Again, nothing of my old blood and marrow system remains: blood type A- has become O+; the marrow itself, in nearly every bone in my body, is entirely from my donor, which also means that the blood and everything part of the blood and marrow system—biochemical signaling (e.g., cytokines), clotting, oxygenating, waste disposal, nourishment, and a multitude of other functions of which I know very little. My blood is no longer mine at all, except, I suppose, by right of possession, and most of us can remember how well asserting that principle of law worked out in The Maltese Falcon. (No, children, not the Millennium Falcon.)

Were I to be a trifle careless at a murder scene and spill a few drops of blood, my donor could be identified as a result of a DNA test. In the process, in passing, not of particular significance, I suppose, I also became female, or so saith the DNA. I've posted about that already.

This is a fascinating situation for a guy who has been wrangling with myeloma for fourteen years. I thought I had experienced all of it—the whole Borscht Belt of it—but nothing is easy. The problem lies in discourse: my donor is a real person somewhere. She isn't changing my hair color, or tearing up my fingernails, or demolishing my callouses. So, meet Eve, about whom I can say valid things without inadvertently making a reference to my donor, may she live a thousand years.This whole subject would be a mere amusement if medical science knew it meant nothing to switch from male to female, A- to O+, live with a foreign marrow, and acquire a completely different DNA profile. However, some differences are significant and observable. I respond to at least one chemo drug to which I had grown resistant (Velcade). Eve is like a new patient who has never been exposed to anything other than the usual childhood diseases and an apple or two. However, because the cancer appears to be gone, I don't foresee having to use steroids in the future except when it is necessary to hold down the graft-versus-host-disease (GVHD), and certainly I'll need no chemotherapy. Eve doesn't have multiple myeloma. Over time, Eve is likely to drop many of her make-over projects as normal becomes redefined (e.g., when she stops hassling my liver).

But interesting thoughts return, probably of doubtful significance, but fascinating to me nevertheless. Although my donor had different parents, we are, in some sense, twins with identical DNA (I can't decide between fraternal or maternal twins). Because I test female, she has a twin-sister-like chimera in San Diego who shares no family resemblances: although, as things progress, perhaps in delicate light some changes in me might be noticed.

My brain is associative more than it is eidetic. I make leap and find connections. But associating names with faces or even the titles of Shakespeare's plays with their plots is heroic for me. Thank heavens I never forget a voice! (Note that I hereby acknowledge having the most ill-suited form of memory possible for the medical profession.)

So the interesting question, crazy or not, is whether or not Eve is sentient. Is there an awareness somewhere, or is all of what is happening strictly biochemical or mechanical? We're in terra incognita again, because there are other possibilities than those two. If there is an awareness, surely it lives in the right hemisphere of the brain across the corpus callosum, the greatest bridge ever built by humankind. Eve and I don't share a thinking process of which I'm aware, so how would she make her awareness known to me, were she to desire to do so? Is awareness the same as identity? (Philosophers please comment.)

So I told Eve what I wanted in several different ways. First, I simply asked her: she, after all, isn't separated from me by a damaged brain bridge. One of the lessons of a severed corpus collosum patient is that the left side has to use drawings or photographs or objects to talk to the right side. The right side recognizes items by touch, too. I didn't tell her what sign she might use to get my attention because I didn't know. Besides, I was feeling crazier by the second just trying to formulate the question properly.

After Eve

Before Eve

The result was flabbergasting. I keep journals. They are all about 275 pages long, each 6"x8", leather bound in Italy. Filling one up takes me about two years. My cursive handwriting is more to be deciphered than read. When excited, I ignore the lines on the page, neglect the dots and dashes, halt at spelling errors resulting in scratched-out words everywhere, and, in general, I scribble. However, a few days after trying to ask Eve if she were actually there somewhere, something changed. Suddenly, I was writing at many times my normal speed. The sentences were written much more neatly between the lines, and the result was easier to read. Spelling bothered me not at all—I didn't even think about it, and had to correct very few words. I could write almost as fast as I could think without giving any thought or energy about the mechanics. The cursive letters were quite nice, for me. This journal, at this rate, will take me about three months to fill rather than two years: Is there a more fitting way to send a writer a message than that? Of course there is always doubt, but to my eyes my journal was a clue-by-four. Knowing how to write is a right-brain attribute.

Yes, I suspect, some of you think there's no difference between my two examples. One thing I can't demo is writing speed without a video. One day I'll fix that deficiency, too.

There are other possibilities than Eve's awareness that might explain all this, I admit, but Eve's way was certain to get my attention. One day, I plead, tell me somehow you are there, Eve. A day or two later, I acquired a new ability. I doubt very much if the quality of my writing has improved one jot, but the penmanship, speed, and spelling certainly have (although, at times, I do revert to chicken scratching when reaching for a word I can't spell).

Other than this bit of strangeness (that I am somewhat embarrassed to write about), I am slowly getting stronger, clearer minded, and more productive, but I can backslide for quite some time when the CMV is active or the GVHD is tearing up my liver. Eve doesn't respond well to prednisone: she reacts rather rudely to it. However, when combined with tacrolimus, that's all we have to fight GVHD. Fight the GVHD too hard, it releases the often-deadly CMV virus. Fight it too little and it goes after my liver. We scientist types call this situation a "deadly embrace", where neither side can find a way to get away from the other without horrific consequences. So we lighten the steroid, the CMV appears, we add Valcyte and up the steroid by 5mg or so, then wait a week. If everything goes the right direction, my doctor lowers the steroid by 5 again and we wait. Eventually, we hope, Eve will tire of attacking my liver, skin, GI tract, and other parts of me and the result will be a return to a semi-normal life.

Wednesday, May 16, 2012

The thought popped into my head unbidden. After the allogeneic transplant in 2010, my chimerism tested 100% donor. In theory, that meant that none of my old blood and marrow remained in my body. In other blood cancers, such as lymphoma, donor lymphocytes (DLIs) are often given after the allogeneic transplant to achieve the goal of 100% chimerism. But I wasn't 100% donor despite test results that claimed otherwise. The chimerism test simply isn't reliable for myeloma. Numerous malignant plasma cells were not picked up by the test and didn't count. But those remaining myeloma cells were clearly mine, not those of my donor. There were a great many of them as well.

Which is why we decided to do risky and exceedingly rare infusions of donor lymphocytes in the hope that they would destroy the remaining malignant plasma cells, which, in fact, they did, while almost destroying me as well. There is no remaining evidence of cancer, and today I probably am 100% donor (my fingernails probably have my original DNA, but for how much longer I can't say).

So I sent an email to a couple of hematology fellows that read something like this, brevity being the soul of wit:

If I accidentally dropped a little blood at a murder scene, would my donor be arrested?

Saturday, April 28, 2012

A, B, O, AB. If you are someone like me, who wishes Grey's Anatomy to end soon and forever (if I thought any medical staff behaved like the staff of Seattle Grace, I'd never go near an hospital again), then you've also heard, when transfusions are involved, the order to "type and crossmatch" the blood. You know that mixing types can be dangerous. There's more, of course, but who cares? I can remember sitting with groups of friends who, for whatever reason, revealed their types. "Oh, you're type A? I'm AB positive!" "How interesting!" Pause. Change of subject.

Ignore these meaningless facts

The classification of blood into types omits everything truly important about blood, which, in my experience, has a little-known dimension that, for those of us who must live in it, is overwhelming and mysterious.

Tuesday, January 31, 2012

After 2005 auto transplant | After 2010 Allo | After 2011 DLI
Be sure to click on the photo for the large view.

Today, for the first time since early December, and with considerable assistance, I made it downstairs from the second floor (sixteen steps and a landing), got in the car, then went back upstairs. The went-backing part was considerably more difficult to accomplish than the go-forthing part. Yet I did reach a major milestone, because now I'm free of expensive non-emergency transportation services carrying me at scheduled times to places I don't always want to go. I can go to a restaurant or see a movie or ride over to Lake Miramar just to feed the birds. Automobiles have always meant freedom to Americans, ever since the Model-T Ford, and, now, I'm finally free again.

The first and second pictures are representative, but the third is not: for those two, all I needed was the photographer. Today, I had a physical therapist (PT) and Ivonne with me, along with a walker. Just out of view to the right is the wheelchair that got me to the spot. In truth, the only time I actually needed something to give me confidence, other than the razor strop the PT tightly cinched to me as if I were a horse, was when the wheelchair had to go down the front-porch steps, but it isn't cheating if I have Ivonne to help. I could probably have gotten myself out by myself through the garage, but what would be the point? I can't drive because of the steroids.

The photo also misleads in that I seem to look stronger in the third picture than I did after the allo. After the two transplants, I was much stronger than I am today: the GVHD of the donor lymphocyte infusion whacked me harder than my mom when she caught me smoking. There is also some nerve damage, possibly progressive, that makes doing everything arduous. I can't walk without mechanical assistance: I need a walker or a wheelchair, and, if the distance is too far, someone to push me. But at least now I can come to a standing position by myself if I have two good, high handholds and have enough sense to wait until my respiration is normal. Tomorrow will always be easier.

On the other hand, this is one of the happiest achievements of my recovery.

Saturday, January 28, 2012

I haven't blogged since late November, but it's not because I didn't want to catch you up on what has happened since then, but rather because I have been physically and mentally unable to do it. Instead, I went ahead with a lymphocyte infusion from a second donation from my donor. The result has been largely unexpected, overwhelming, and quite improbable.

I wrote the whole story this week, but because of its vast length (my longest ever post, something over 2,000 words, so, of course, it had to be shortened if someone else other than myself wanted to read it) and its dark tone (recovery has been, and still is, difficult and dangerous), I'm going to serialize it for emotional consistency.

My allogeneic transplant from a matched but unrelated donor (also known as a MUD), did put me in partial remission, and gave me a year before progressing, a good year. Then came progression. When allos progress, they often progress rather quickly, and, usually, there's nothing that anyone can do to even slow them down: all chemotherapies are used up; something on the horizon that might help (but not now); followed by a predictable and swift end.

As I've alluded to, there is a rare procedure for myeloma, however, called a donor lymphocyte infusion (DLI), which, if it works, can resensitise the new immune system to attack the myeloma.

How often is it done? The Blood and Marrow Transplant Center at Scripps Clinic has been in operation for more than thirty years. In all that time, DLIs have been given to myeloma patients only three times. One recipient did survive for something like another ten years, but I believe the chronic graft-versus-host disease (GVHD) did not make that time pleasant. Another recipient didn't make it. I am the third. The procedure is almost always one in the context of a clinical trial, and should be.

Although almost routine for other cancers, such as for lymphoma, DLIs are often performed to insure that after an allogeneic transplant there is only one new immune system in the body, the donor's system, with no remnant of the original (a state called "full, or 100% chimerism"). In myeloma, uniquely, chimerism turns out to have no bearing on the outcome of the DLIs. Another reason DLIs for myeloma are rare is the result is not as predictable as it needs to be to be safe for myeloma: nothing at all can result, there's GVHD without an anti-myeloma effect, which can be miserable, and there's death from complications (e.g., liver failure, pneumonia, kidney failure, CMV infections, destruction of connective tissue, alimentary canal damage: the infusion can attack just about anything).

On the other hand, if I didn't do DLIs, my fate was clear and approaching. Me being me, with a history of phenomenal luck, and after reading the recent journals, I pushed hard to do it. It took some convincing.

There's no graft-versus-myeloma (GVM) effect without GVHD occurring in less than one hundred days (referred to as "acute" GVHD). After that, if GVHD occurs, it's called "chronic" and provides little or no benefit. So DLIs, when given, are often given at intervals (of several months or longer) to provoke the necessary acute GVHD response. The average time to ultimate response, if any, seems to be four to five DLIs.

There's part or me that didn't want to show you Grade IV GVHD. This is not me, I believe mine was grade III. My skin is red, but returning to normal after exfoliating, my donor must hate callouses, and my GVHD has attacked my liver, skin, and bowels more than anything else.

I calculated the odds from good data for achieving aGVHD on the first shot: less than %5. I expected that there would be no immediate consequences, negative or positive, of the infusion (we were looking for aGVHD to appear perhaps weeks later). In fact, it went down like this: I agreed to proceed on Monday, 28th November; the cells arrived by the next day; on Wednesday they were infused in the afternoon and I went home. By the next day I was admitted to hospital with a horrendous case of GVHD. They doped me with methylprednisolone, to suppress the reactions, which caused serious delirium. Apparently, I was unconscious but active, rolling my eyes around to no purpose, attempting to pull out my picc line (I succeeded on the first one), completely out of it. By that evening I was back in the ICU fighting for my life. I'll write about that shortly. Of all of four hospitalizations for myeloma, this was the most punishing. Several doctors thought I wouldn't survive.

Three Days after DLI

But I did survive, and after a few days I was back in my regular room, unable to do anything for myself. Two weeks after the infusion, I asked for a test of my light chains: I wanted to know if all of the suffering I had endured did anything to the cancer. A week or so later, the doctor who pioneered the facility brought me the results, but unlike the five lines I usually see, it was a full page of words. With my head full of steroids, which made reading difficult, I tried to understand what the report was saying: I knew the possible danger of reading into the words what I want to them to say, so it took three times through the realize that the report was saying complete remission. No sign of "extra" light chains. Further, every one of the three numbers was in the middle of the normal range. The cancer was gone. My luck still holds: I got the 5% result, and enough GVHD to fight the cancer without yet killing me in the process (at least, not yet).

I was stunned. When the doctor who has directed the Center for more than thirty years leaned over with a flashlight to look in my mouth, I said to him, "Do you mind if I kiss you?" This guy may be in his seventies, and I must admit it was fun to watch him try to react! He'll never forget me now. When he demurred, I said, "But you did hesitate!"

After that, I had no brain. All I could think about, when I could think at all, was my impossibly perfect outcome from a single DLI, and the sequence of events that led to it as well as the rapid consequences: immediate response, effective response, GVM, first try. With respect to likelihood, we scientist types like to use the phrase "vanishingly small," as in, "the probability of that event happening is vanishingly small." This refers to anything theoretically possible, but with a probability of occurrence so low that it would never occur in the real world. Many of these near-impossible events had to happen to get me to this point, which are on this blog somewhere below.

What do I do with that? The eternal question arises: why me? I feel, probably illogically, as if I have acquired a responsibility, but I'm not sure what it is let alone how to carry it out. In earlier posts I've detailed all of the unlikely events from which I've benefited, but this latest is overwhelming. The only thing I know I have to do is finish the book, even if I end up being the sole reader.

CR, on the average has just given me another multi-year lease on life without cancer: the present curves suggest five years or more. There is also a non-vanishing possibility that I'll never see multiple myeloma again.

Last Wednesday I spent hours in the hospital, as I have to do once a week. When they wheeled me into Hematology on my wheelchair, for some reason I was left in an open space for a time. During that time all but one of the doctors who had treated me walked by and said hello (the other one I saw earlier). I'm guessing it was a shift change, but it was then I began to realize that my survival is a huge triumph for the doctors and nurses, too.

Next post will tell you about what the DLI did to me and is continuing to me. I thought that after the allo in 2010, nothing could possibly be as difficult from which to recover. I was wrong.

Friday, November 4, 2011

I perked up considerably this week when I heard that my young donor has agreed to donate again! In fact, she will be making the donation on the eighth of November, and the cells, on ice, will be flown to San Diego the following day where they will be divided and frozen. So, in about a week I will receive my first lymphocyte infusion (DLI). Cure is still a possibility!

We do have sufficient cells left over from last year's transplant for one big infusion, so my continuing survival wasn't entirely riding on the decision of my donor. However, a one-time, big infusion (which is how donor lymphocytes were given originally) could very well have given me severe graft-versus-host disease — even to the point of being fatal. While we have to have GVHD to have a graft-versus-myleoma effect, the risk of a big dose is unnecessary. If given periodically in lower doses, DLIs are just as likely to produce a response but are much safer. We could have gone with the Big Dose weeks ago, but I thought asking for another collection was worth the risk of delay. I wasn't terribly worried that she (my donor) would decline to donate a second time: people who have actually donated, and not just registered their intention to do so, will almost always do it again if needed.

I must tell you, my life has been bleaker and more desperate in the last few weeks. The reaction to Velcade and Decadron, my reinduction chemotherapy, has been horrible. By the end of the cycle, I had deteriorated so much that I was predicting to Ivonne that I would be in hospital within days: I had become so weak that I could do little but lie in bed; neuropathic pain forced me to take six times my usual dose of pain killers (which blunted but did not control the pain); I did not want to eat; I would sleep for a few hours, wake up for an hour or two, then return to sleep. Because of an episode in early 2011 of tardive dyskinesia after taking a tiny bit of Seroquel, I no longer am able to use a small dose of a major tranquilizer as a sleep aid. Eyes Wide Open!

The worst part was going through the agony of chemotherapy with little hope of success. My cancer had become resistant to everything but dangerously-high levels of dexamethasone by 2009: why should it be anything other than more resistant now?

And there's the surprise: this week's measurement demonstrated a significant drop in the level of cancer. A chemotherapy that failed me years ago is now working. This is wonderful news because the likelihood of achieving remission after donor lymphocyte infusions is greater if you demonstrate a response to reinduction chemotherapy!

The right eye is damaged. Click for larger view.

Not all the news is good, though. Myeloma has attacked my right optic nerve in the form of non-arteritic anterior ischemic optic neuropathy (AION), a devastating disease leading to blindness. I have some vision at the moment, but not much. The left eye has not been attacked thus far, but both eyes are often affected. If I make it three months without losing the left eye, I will probably be safe. The only thing that can be done to protect my remaining eye is to fight the cancer, which is something you can safely bet that I'm doing.

Since recently accepting that I had fallen out of remission after the allogeneic transplant, I have had to also accept the likelihood my impending death (median survival at progression, 4-6 months). I've been addressing all of the pressing things a dying person has to do to make life easier for those he will leave behind. I've been once more thinking about my Bucket List, although it is much emptier now than when I first wrote about it years ago. But the sadness was inescapable. I had the the sense that most of the things I thought important to do would be for the last time. For example, I've been showing Ivonne my favorite movies (Casablanca, African Queen, Lawrence of Arabia, etc.) being quite aware that I would never be seeing them again. I've been teary. I've worked hard to be a good father and husband, protecting my family and guiding them. I've been in the arena with Death for so long now I've become inured to my inevitable defeat: I've fought the best fight I could, which is comfort enough. I grieve rather for the sorrow and hardship I will leave behind.

Well, screw that! The game's not over yet! The oppression on my heart has lifted. Cancer, I'm ready for you. Take your best shot! You are MINE!

Friday, October 21, 2011

The little brown man in the dark blue uniform stared at me with steady eyes that revealed absolutely nothing: they very well might have been buttons sewn onto his face. He was small in stature for a Migra (Border Patrol Agent), and old in a weather-beaten way. Despite his stature, I could tell he could put me on the ground in two seconds without breaking a sweat. He said, "There is another paper." He stared at my face intently, without revealing anything it all, perhaps not even blinking, without impatience, stoically waiting for my response. Time stopped.

My thoughts were racing: I said, "This was the only paper we have!" His response never varied: "There is another paper." He never took his eyes off my face nor revealed anything in his. My fear was building as I tried to understand what this mistake might mean.

Ivonne, who was going through the immigration process (torture?), had just received a notice of immense importance to us, her Advance Parole. No day was more eagerly anticipated by us than this one. Finally she could go home.

I knew nothing about immigration before marrying Ivonne. I just remember all the war movies that ended with the soldier telling the immigration officer, this is my wife! She's French! And the officer saying, "Welcome to America!" That image is now quaint. Today the process is expensive, long, and dangerous. From the first moment you file the paperwork, both of you are considered criminals until proven otherwise. Do you like the term, "Advance Parole?" Paroled from what? Some form of imprisonment?

Yes, exactly.

There are two ways a family member can immigrate to America. The longest, most expensive, and most dangerous, is called Consular Processing (CP). In CP, all of the investigations and processing must be done in the foreign country. Further, there aren't that many places in a foreign country where the processing can be done. For those who live near the US/Mexican border, that means long trips to Ciudad Juarez, one of the most dangerous cities in Mexico, where the US Consulate and associated medical clinics do the processing. It can require years of separation between you and your bride. I didn't have years.

The other available way, if the alien is legally in America, is called "Adjustment of Status." (I am becoming annoyed at referring to my lovely wife as the "alien:" she is not green and does not have eyes on the end of stalks.) In Adjustment of Status, along with the form I have to file, the I-130 requesting my spouse be allowed to immigrate to live with me, she can file an I-485 for herself at the same time that that says 1) I'm already here legally; 2) when you decide on my case (Lonnie's I-130), I ask La Migra to adjust my status to that of Permanent Resident. All processing takes place in America, and it's cheaper and quicker.

That's how I brought Ivonne over. She had a long-term tourist visa (B2). This visa is for people who live on the border who need to cross often for shopping, visits to relatives, to doctors, and so forth. They have to own property in Mexico for several years, have a solid work history, pass criminal background checks and have a clean immigration history, demonstrate strong family ties to the border city in which they live, and so on. They won't give you a visa if they think you might disappear into America with it.

So my new wife and I could stay together until her status was settled. But along with this process comes a terrible restriction: under no circumstances can she leave the country before her case settled. If she did, her visa would automatically expire and be confiscated and she would not be allowed back. Her processing would revert to Consular Processing, which would delay her entry for years.

A few weeks after we were married, for a period of about four months, she stayed here with me. The problem with that was that her father in Tijuana has a couple of chronic illnesses, and her four children were there as well (then aged 11, 13, 14, and 15)! Although all but one had visitor's visas, and could occasionally visit their mother here, such visits cannot substitute for the care they really needed. If anything went wrong, what would she do? Could she stay here while, for example, her father died or her children were dangerously sick or seriously misbehaving? Where would the children live? Who would look after them? How would they go to and from school? Do the laundry? Feed themselves?

We were very lucky. Nothing truly bad happened. Ivonne's enormous family took care of the children, their grandfather made sure they got to school (and bought them a lot of fast food), and no one was hurt or seriously ill during that time.

The separation was about to end when the magic paper arrived, the Advanced Parole. She was given permission to leave the country (USA) and return as needed until her case was settled. She could be with her children again! I had set up a video link so that they could see each other and talk, but there are no digital hugs over the Internet. It was a difficult time.

The reason I was staring at the little blue-uniformed man was that this was our first attempt to use her new privilege. We decided to surprise everyone on New Year's Eve day by first finishing the process (there are things that have to be done at the border before she can just come and go), then crossing a second time to be with the family.

We parked the sedan by the McDonalds on the US side, walked over a long, grueling set of bridges and ramps, then waited in the line to enter the US visa office on the Mexican side. I remembered to bring my cripple sticker with me, so we were allowed to go to the front of the three-hour line where we ran into the little brown man who looked at what we brought, then asked, "Where is the other paper?"

Horrors flooded my mind. We were on the Mexican side of the border with inadequate papers. They might not let her back into America. We'd have to start over with Counselor Processing, adding months or years of virtual separation and thousands of dollars to the process. All the frightening months of enforced separation which we thought were behind us would have been for nothing!

While these thoughts were going through my head, the little man never blinked, never took his eyes off of me, never said a word. I was practically swooning and could feel despair rising. Finally, after long moments, I turned to him and said, with resignation in my voice, "What do we do now?"

This was apparently the right answer, or, rather, the right way to answer. He came alive, took me by the arm, and pointed to a bench across the way: "Go, sit on that bench!" I was confused, bewildered, so he repeated himself: "Go, sit on that bench and wait." (It should be the motto of the immigration process: Sit Down, Shut Up, and Wait!)

As I wobbled off to the bench, he took Ivonne into the windowless building. It was a cold, concrete bench that gave the impression of never having been used. My future was flashing before my eyes. I was about to lose the luckiest and best thing that has ever happened to me. Would she be deported, her visa confiscated? Would we have to start over? We were newlyweds—when could we possibly be together?

What seemed like hours passed with me in this horrible state, although it was probably more like twenty minutes. Filled with fear and despair, all I could do wait. I remembered the other sheet of paper: it was a duplicate of the one we brought. I thought it was for our records! Ignorant fool! Stupid!

Then, looking for all the world that nothing important had happened, out she came, smiling and calm, as she always appears on the outside when in the presence of La Migra, and as I stood up to walk with her across the border for the first time. I said, "What the hell happened?" She told me that the little man took her to a station where the papers were to be processed. The woman looked over what we had and said, "Where's the other paper?"

The little brown man replied, "Make a xerox!" then wandered away. That was it. We were free, except for a bit of final nonsense at the actual border line as final checks were made.

We walked to the car, then crossed much more easily a second time to go to her father's house, where no one was expecting us. I sat in the car for a time and simply watched as Ivonne and her son, Ruben, each other for the first time in months. Ruben had grown at least two feet and was now, much to her surprise, as tall as she. They stared at each other. She saw a bump on his chin, and said, "You have a pimple." To say that the reunions were, well, "moving" would be using an wholly-inadequate predicate adjective.

We spent a long time with them: it was the first time we had been all together, and I was to meet Ruben, her son, for the first time. I was reminded of The Lord of the Flies at the moment that Brit Navy finally rescued the children: for a moment, the children couldn't understand what had happened, and when they finally realized they had been rescued from having to govern themselves, as if they had been adults, they started to cry. They could be children again: their mother was back!

Well, only for a few hours. But now she could travel to Mexico as needed to do laundry, clean house, make dinner, help with homework, settle disputes, all the things that make a child's world feel safe.

I told the children, in my very poor Spanish, that we would now be bringing them all to America as soon as possible. Ruben, the one boy, is a quiet sort, often seeming to be not part of the group, not perhaps even thinking. But deep inside was a great fear: his father had lost his visa, or sold it, so perhaps he wasn't going to be able to come to America with the others.

By way of explanation, and I hate to sound racist, but little Mexican boys do look a lot alike. If they have a visitor's visa, it can be sold to someone, a Coyote, who finds another boy that looks very much the same. They cross the border, $3000 changes hands, the visa is returned to the Coyote, and the process is repeated until they are caught or the visa expires. We suspect his biological father sold his visa. Ruben was stuck in Mexico and had to endure Consular Processing.

Deep inside, he was afraid that he would be left behind. I told him not to worry, the problems with his paperwork in Mexico meant nothing. "I am an American, you are my step-son, I will ask for you and they will agree. Nothing can happen here that will prevent your being with us. There's nothing your father can do to stop us." When I explained this to him, and my meaning sunk in, his whole body shuddered as if he were having a convulsion, as relief flooded his body. I even gave him my promise that he would be the first to cross. Mi promiso! That turned out to be a bridge too far: he was actually last. As it turned out, it took a lot longer to bring him to his new home than any of us had imagined, and the process was costly and dangerous, but that's a story for another time. Today, we are all here in Scripps Ranch, all four are attend great schools, and, as of about a month ago, they made the psychological shift: San Diego is now home for them; Mexico is where they were born. (Can you hear me sigh in relief over the keyboard?)

PS: If I had answered La Migra in some other way, and she had been denied admission and had to restart the with Consular Processing, I would probably not be alive today. When we married, I was in partial remission and doing fine, but two months later it was clear that I had lost all control of the cancer and had little time left. The doctors would not have offered me the allogeneic transplant had I not had an adequate support system at home for my recovery. Fortunately, Ivonne had shown in many ways that she could and would take good care of me, so that never became an issue, insofar as I know, in the decision to put me into a research program for allogeneic transplant in myeloma. I needed more care than any of us had envisioned, and she gave it to me.

Steve Jobs infuriated family and doctors by putting off surgery in favor of alternative treatments. For more than a year, he relied on "fruit juices, acupuncture, herbal remedies and other Internet treatments." While being one of very few people who have had their cancer's complete gene sequence identified, he dabbled in medical voodoo.

Even the most rational of us, in the face of a terrifying diagnosis, can act like fools even to the point of foregoing or delaying treatment. I have known well some who shortened their lives by avoiding "chemo" or surgery in favor of treatments of no proven value (and, in the case of immune boosters in Myeloma, may have intensified their disease). My friends have tried all-fruit liquid diets, coffee enemas, magnetic "alignment" machines (Rife), and ruinously expensive quack treatments in Tijuana, just to name a few.

The challenges of effectively fighting a dangerous cancer are numerous. If the cancer is rare, average doctors are often unaware of current research and treatment and still administer VAD, or MP, to a younger patient: they look in the book written years ago, and do what it says. The disease is occult, so we often ruin our quality time obsessing over medical tests during periods where there is no need for us to do so. But the biggest obstacle is the fear of dying: we wouldn't be human without that fear, but allowing it to drive the decision-making process must be overcome. When a disease is incurable and universally fatal, we, as patients, have a greater right to discuss treatments with our doctors and make choices than do those with common, curable illnesses: this is because all of our alternatives are, in some sense, bad. Pick your poison (rationally).

But too many are like Steve Jobs. Timely surgery might not have helped, but delaying it certainly did not help. Why would an otherwise brilliant man act so stupidly? He let fear (and, perhaps, denial, the other great mechanism for self-defeating behavior in cancer) get the better of him. My book, if I can live to finish it, is about how to embrace fear squarely and disconnect it from medical decisions while also fighting cancer with evidence-based medicine. It suggests ways to improve ones remaining quality of life by giving the cancer as little time and effort is possible.

Right now, in my personal battle, QOL has become an issue, mostly as a result of doctor indecision (but also due to Velcade, dex, and a stupid cold). I did my homework, I know what I want to do, but getting it through the tumor board is proving to be challenging. While waiting in suspense through this infuriating bureaucratic delay, my good time has diminished, but, hopefully, in a week or so, the course will be decided and I can return to fully living my life.

Friday, October 14, 2011

After the usual tests, plus a bunch more, it became clear that my new immune system can no longer contain the cancer. The speed with which my markers are deteriorating is frightening. The cancer (FLCs) jumped by a factor of 1.7 in one month and is accelerating. Pain from neuropathy is also worsening: I needed only one Vicodin 5/500 a day for pain, but now I need up to three. And if that weren't enough, I'm losing the sight in my right eye due to myeloma light chains attacking the right optic nerve (which isn't brain cancer). I'm not even going to mention ED!

This chart begins after the allo. The kappa low point was

15.3. Today it is 141. Normal is 1.94.

For those of you who understand lab tests, alkaline phosphatase is 195 (below 126 is normal), Beta-2 microglobulin is 4.5 (normal 1.7 or lower), and my IgA is low. Potassium is low, too.

The cancer is no longer under control; in fact, insofar as I can tell, it is not even being hampered in its exponential rise. In essence, the new immune system has "decided" that these malignant plasma cells must be normal and has stopped fighting them.

What does this mean? From survival charts I've put on the blog before, and after studying more recent data, it will be rare if I survive another six months. I am going to try once more to shove the Beast back into its cage, but the odds are against me this time. I'll tell you what I'm doing a little later in this post.

I've written extensively on this blog about the End Game. You've reached the end game for sure when your doctor says, "I'm sorry, there's nothing more I can do for you: I will be calling hospice immediately." Of course, if you've been awake and aware, you know it is coming, and from that time on, you're in the End Game even if your doctor hasn't yet said these hopeless words to you. You might be working on your bucket list long before you actually have reached the End Game, but it will in all probably change when you've passed the anticipation stage and are firmly in it as a player.

Of course I was delighted to put that subject behind me when I responded to the transplant in June 2010. Now I'll have to take it up my Bucket List again and, perhaps, finish it. If you want to catch up with my musings on the subject, here is a good place to start. There are also a few posts about my Bucket List.This one too. In the next few weeks I'll be revising my list and will post it, most likely, as My Final Bucket List, which may include the things that were on the list that I achieved or abandoned, as well as any new things. (I really should see the damned movie, but I can't seem to get around to it. I have the idea.)

For a while, two weeks ago, I suffered from iatrogenic whiplash. My doctor swept in with a cheery, "Haven't we cured you yet?" He was all for donor lymphocyte infusions, DLIs, which are direct infusions of the same cells that were collected from my young female donor for the June 2010 allogeneic transplant (NMA/RIC, or non-myelo-ablative reduced intensity conditioning allogeneic transplant). It appears that we have one bag of her cells we didn't use, and that bag had the right number for a one-time infusion. These days, it is usual to give lymphocytes in periodic, escalated doses, so several bags are collected of just the right size. After the first dose is given, there's a period of watching that may last months. When the effectiveness (or lack thereof) can be assessed, another, slightly larger dose is given. And so on. There's a clinical trial that proves that escalated dosing is as effective as one big infusion but is much safer. If we can't get new cells from my donor, then we throw the long ball with the big bag we have.

The whiplash came later, when the doctor came in, all down and stuff, and said he had been talking with the transplant board (in other areas, it's a "tumor board"). They didn't think we should go forward because there's little evidence of effectiveness of DLIs working when the patient is maintaining 100% chimerism. Which I am.

What that means is that a chimerism test demonstrates that all of my cells belong to my donor. Often the donor cells show up as a second chimer, especially at first. That's when DLIs are normally given, with the purpose of putting the patient into 100% chimerism. (Now you may be wondering, with a great number of malignant plasma cells from my old blood causing trouble, why they don't show up on the chimerism test? Answer: inadequate chimerism test for myeloma.)

In any case, by the next day I had found a recent journal article in Blood describing a clinical trial that proved that the degree of chimerism is irrelevant in the prediction of remission from DLIs in multiple myeloma. The proper goal of DLIs isn't to achieve complete chimerism, but to achieve remission! The old rules have the wrong goal. So we're on again.

I had let myself slip into patient mode when the transplant started. You see, an extensive knowledge of myeloma has little to do with what the transplant doctors have to know during the procedure. They worry about engraftment, infections, kidney function, pulmonary problems, things I don't know anything about. So I just relaxed into the presumptively-benevolent care of the doctors like a normal patient. I snapped out of that mode too late. We probably should have done the infusions last June, when it was clear that I was slipping out of remission. We should have built DLIs into the plan from the beginning so we wouldn't have to be going through this goat screw now to obtain them. I've spent the better part of the last two weeks downloading recent (and expensive) journal articles to support donor lymphocyte infusions for patients in my situation. There was a clear path forward. I explained it, justified it, and, now, were on it.

To make my dire situation clear, there's about a 12% chance of dying from DLIs as a result of acute graft-versus-host disease, and a combined 30% chance of achieving either PR (partial response) or CR (complete response). The rest of the responses vary from none to hellish GVHD.

Beween now and the first infusion, I'm doing dexamethasone and Velcade (by infusion for now, until insurance approves subcutaneous injection at home). One 10mg dex by infusion kept me up the entire night last night. I used to use a tiny bit of Seroquel, a major tranquilizer, to put me to sleep, but two years ago it gave me an episode of tardive dyskinesia, which in turn gave me the worst night of my life. Thank my lucky stars the episode ended about eight hours after it began. From now on, I can't touch major tranquilizers, so I have to stay awake on dex days (and nights).

Wish me luck. If I only get a partial remission, it may be enough to get me through to the approval of Carfilzomib, the latest and greatest imid for us. A complete remission could last for years, so I could start working seriously to get a job.

Saturday, September 17, 2011

Ebbe Skov was diagnosed with multiple myeloma, an incurable, universally fatal cancer, in 1999, less than a year after I was. In such a horrible context, it was great good luck that I met him and his devoted wife Margrit at a local support group meeting. A difficult journey into a strange and terrible land is always easier with amiable companions, and he was certainly that for me: always cheerful, supportive, objective, and reliable. He belonged to a like-minded group of us who fought the disease together in a similar way: now, I’m the only one of us left.

We were scientists who fought our disease like scientists. Ebbe read every relevant journal article he could find; plotted the mathematics of his disease on charts and spreadsheets; and knew his options better than his doctor, whom he doggedly tried to educate. He did his homework, which many of us are unable or afraid to do.

Ebbe managed to be vigilant without being afraid, which is a rare accomplishment. I’ve never known anyone who monitored his condition as closely as he did, which, for him, was a requirement. While most of us have bone tumors which are easy to sense, because they hurt, his could be anywhere, symptomless: around the throat, over the heart, or in any soft tissue. He was regularly besieged by them.

Yet throughout the ordeal, I found his spirit to be truly remarkable. Fear did not bend or break him as it does so many others. He did not panic, nor did he feel sorry for himself: I never heard him say, “Oh, woe is me,” “This is so unfair!”, or a bewildered “Why me?” Instead, he donned his armor, polished his sword, and went after the Beast with everything he had. He fought an heroic battle despite knowing he would eventually lose: a rare man indeed, a leader and an inspiration to the rest of us who must follow.

My theory is that the bravest and most successful cancer warriors have the support of a strong woman, and Ebbe certainly had that. Despite the heavy bludgeoning of fate, Margrit was forever beside him, loving him, lending her strength. As a result, he lived more than twice as long as most of us do.

My personal journey will be harder now without him. Good bye, Ebbe, dear friend!

Tuesday, September 13, 2011

This morning I was up early despite having a restless night. My second-floor bedroom opens unto a small balcony. I listened to the birds at the feeder about ten feet away: it hangs from a nail under the eaves. Actually, what roused me was what I was not hearing: the raucous sound of finches, sparrows, doves, and the occasional scrub jay squabbling over the six prime feeder positions. (Although at first glance they appear to be fighting, their beak-to-beak pecking is stylized: they are careful not to do each other any real harm.)

Then I realized I hadn't filled the feeder last night. As quietly as I could manage it, I slipped out of bed, put on my shoes, and slowly and carefully opened the screen door: I didn't want to wake Ivonne. I keep a weather-proof box of black-oil sunflower seeds on the balcony. A full feeder barely lasts one day. I failed, though, to be sufficiently stealthy to avoid rousing Ivonne. But, now, after doing a full St. Anthony, the normal, meaningless, and quite satisfying sound of dozens of birds once more enhances my morning bagel and coffee.

I absorb myself in an article in today's New York Times that seems to herald the end of the manned-space era. A couple of weeks ago the Russian cargo ship, a Soyuz, crashed on its way to resupply the three astronauts who struggle, some would say vainly, to do meaningful science in low-earth orbit. For safety reasons, the leaders are discussing bringing them home. What do you think: if we come home, will we ever go back?

Reality is crashing in on the science-fiction dreams of my boyhood. What can be reasonably done has been done. We won't be traveling to distant planets, or warping time and space: we're stuck here and have to make the best of it. The landing on the Moon in 1969 was our high point as a species, literally and figuratively, a triumph of technology and imagination. Mankind had been wanting to go there since the first human looked up from the ground, agape, at the night-time wonder of it. We not only achieved that ancient dream, but, being Americans, after all, we broadcasted it live on TV. Nothing we can imagine could possibly top that, not even Texas' plan to show its executions on pay-per-view.

TREATMENT TIME
Hope is not a strategy. I'm not one to sit idly by, hoping that things will get better. But I'm also as prone to denial as anyone else, especially when the vicissitudes of life are largely resistant to my control. While I killing time and powerful space aliens in Duke Nukem Forever, my light chain numbers, which, for me, measure cancer activity, are rising. Take a look at my latest post-transplant chart:

Click above for bigger and interactive version

The red line, which is my kappa, is now at 84.8 mg/dL, the highest it's been since the transplant. The nadir, 15.3, occurred in March. For someone who, pre-transplant, withstood a spike of 2140 (normal is 1.94), I'm not rushing out to buy a cemetery plot, but I am afraid: once more I must work through the inner process of drowning it in the bathtub. To rely on hope would be expecting to see a spontaneous drop in the future: after all, as you can see from the red line, the value has risen and fallen on its own more than once since the allogeneic transplant. However, what I'm seeing now looks more like a trend than a seesaw: the numbers have been rising since late May. The faint black line is a computed kappa trend line: no complicated analysis is needed.

One of the most difficult challenges in fighting cancer, especially one that is generally incurable and usually fatal, is to decline to ride the prognosis roller coaster that careens from denial to despair and back, pausing at times for brief moments of elation. Not every change of state is meaningful: even when a change is meaningful, the normal emotions engendered by the swings don't help. Fear is cancer's natural ally. My slowly-proceeding book is, in part, how to disconnect the corrosive and often deadly effects of fear. Wallace Stevens said it best:

THE SNOW MAN

One must have a mind of winter
To regard the frost and the boughs
Of the pine-trees crusted with snow;

And have been cold a long time
To behold the junipers shagged with ice,
The spruces rough in the distant glitter

Of the January sun; and not to think
Of any misery in the sound of the wind,
In the sound of a few leaves,

Which is the sound of the land
Full of the same wind
That is blowing in the same bare place

For the listener, who listens in the snow,
And, nothing himself, beholds
Nothing that is not there and the nothing that is.

Ok, so shoot me, I was a Yalie English major.

It is necessary to be able to distinguish between change and meaningful change. Most of the time, as the emotional trolly follows the numbers, hauling us up and plunging us down, the whiplash is uphelpful. But as I stand in the full cold snow of Wallace Stevens, staring at the numbers, I have to conclude that I'm staring at a moment that calls for action. Knowing when you need to change course must be coupled with the other survival skill in the battle against cancer: being clear about what other treatments are available and likely to work. Everything else is irrelevant. There are a limited number of treatments (a handful); if you earlier had become resistant to a given treatment, returning to it later probably won't work; and clinical trials can waste precious time, often don't provide a benefit, and, rarely, can do actual harm. They are, and should be, the medical equivalent of a Hail Mary pass in football.

The battle becomes much simpler over time in that fewer treatments remain. At this point, all I have left is donor lymphocyte infusions (DLIs) and lenalidomide (because lenalidomide can fight the cancer without damaging my new immune system). But I became resistant to lenalidomide years ago, so why should I expect it to work today?

GVHD

Donor lymphocyte infusions will probably work, perhaps even to the extent of complete remission. After a long period of fighting, immune systems sometimes do the equivalent of redefining normal: they give up the fight, which is what is happening inside me now. DLIs will reinvigorate the immune system to destroy the malignant cells. However, while ratcheting up the graft-versus-myeloma effect, they generally also considerably ratchet up the graft-versus-host disease, which, for me has been thus far quite manageable. Take a look at how bad GVHD can get. Click on it for a really good look.

GVHD can attack anything: eyes, mouth (one of my friends lost a few salivary glands), toe and finger nails, GI tract, connective tissue, you name it. After DLIs the GVHD is usually more than mild and can be life-threatening.

The other downside is that steroids are the usual treatment for severe GVHD. If you've been following this blog, you know how easily steroids can drive me to the brink of insanity.

So, that's where I have to go next. In early September, my doctor and I will discuss going back to my donor for another shot at cure. I think he wants to try lenalidomide first, but that will take a lot of convincing.

The good news is that I won't have to endure once again the horror of last summer: four months in hospital; eighteen days in ICU; extreme weight loss; difficulty eating (even jello tasted vile); and life-threatening complications (I had pneumonia, kidney failure, deliria, heart irregularities, and a massive GI infection). I'd hate to have to repeat that experience. But, again, the DLIs are quite likely to work against the cancer, and, who knows, I might get lucky with respect to the GVHD. Yin and Yang, profit and loss, left and right, GVHD and GVM: no pain, no gain (or, as I say to my athletic friends, no pain, no brain).

THAT CENTER DIVIDER MOVED!
Today I am $16,000 richer and immeasurably poorer, after State Farm totaled my beloved Mercedes SLK320. I am trying to be philosophical about losing a car that provided the most fun possible to have on four wheels (although teens would not like the absence of a back seat). In pristine condition, with but 59k miles on the odometer, this 2001 beauty could accelerate and corner as excitingly as any stock car ever made: the horsepower to weight ratio was enormous. On top of that, I loved that it could switch from a being hardtop to a roadster in 23 seconds at the push of a button: I could do it at a stoplight if the weather changed. The inside was all leather and burled walnut: even the steering wheel was made of gorgeous wood.

I really don't know how I managed to destroy it. Was it a senior moment? My eyes have deteriorated considerably in the last decade, due to botched lasik in the right eye coupled with annoying floaters and a posterior staphyloma: maybe I didn't see the center divider because I couldn't see it in the shadows. I wasn't going fast, just normally accelerating from a stop light on an unfamiliar but complicated road, trying to make a turn. Wham! Oil on the ground. Au revoir, Mercedes.

When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.

With four children, what I actually need is a six-passenger car, like a Honda Odyssey, not the two-passenger babe magnet that I had. It's not what I want, it's what I need. Doesn't that suck! I hated wondering how, with the Dow Jones falling like a skydiver whose parachute didn't open, I was going to afford a down payment: now I have one. I could have tried to rescue the Mercedes from the boneyard, but it's time to do the mature thing. As a result, my inner teen is screaming.

Fate has a sick sense of humor. After diagnosis, when I could no longer work and was surviving solely on private disability insurance, a man who owned an air ambulance company whacked me on my motorcycle in 2003, putting me in a wheel chair for eight months and making me $1.6M richer. I had wondered how I was going be financial secure before the cancer got me. Thanks, Fate—next time, let me win the Lotto instead! (I did salvage the motorcycle: it's in my garage needing a bit of work. The trouble is, I'm getting to be too old and too slow, and the neuropathy in me feet is so bad, that I can't ride it safely except around the block. Ratz!)

Words of wisdom, the first from my Computer Science professor: "He who matures last, matures most." Well, I am today reaching heights of maturity that really and truly bite. Maturity is, after all, the consolation one receives from abandoning ones goals. But, more than that, aging coupled with the a prolonged fight against a deadly illness is marked by a succession of losses: work, which defines most men; youth, which spurs you to climb mountains and lane-split on motorcycles; the future becomes more confined and more restricted, giving the lie to Robert Browning's, "Grow old with me, the best is yet to be" nonsense; losing the sense that there's plenty of time left.

[Pow!] [Bam!] [Wham!]

Ok, after slapping myself around a bit, I am reminded about how lucky I truly am: a succession of near-miracles has made me happy despite what fate has rained down on me. First, I'm still here: isn't that amazing! Second, I am happily married to a beautiful woman half my age and, at long last, being the good father I couldn't be in my first marriage. Did I mention I'm adopting the children? Shazam, instant little citizens of the US of A! I haven't run out of ammunition in fighting the cancer. My mind is sound: recently I've memorized another Beethoven piano sonata, relearned the guitar (I was a folk singer long ago), and have written a good chunk of my book (which is turning out to be an autobiography). More than a year later I'm still weak, but I am lifting weights at the gym regularly. Ivonne and I are warm and successful.

DESTITUTION IN SIGHT
I'm well enough now to go back to work, and I need to: I have four teenagers who need braces and college educations! So I sent my résumé out into the world last month only to be greeted with a resounding silence. I'm practicing my technical skills ("Good morning, Walmart shopper!"). Maybe I can get an advance on my book (hahaha!).

Rarely is the financial disaster of cancer discussed: I think this omission is a matter of masculine pride. With disability insurance, Medicare, a small pension from General Dynamics, and the motorcycle settlement, I didn't need to worry about money: statistically, I expected to be dead long before I ran out of it. Yet, here I am, thirteen years into the fight with no end in sight, with a young wife and four adorable kids. What happens to me and my family when my house, which still has some equity in it, goes under water, my mutual funds tank, and my credit is exhausted?

I don't want talk about it. I don't want to even think about it. But ever looming in my mind is the distant specter of destitution: come visit me and my family under the I-5 viaduct at Mercy Road!

Ok, enough of the maudlin BS. I've been lucky thus far: something will come along. Some major corporation will have the good sense to hire me, my book will be a resounding success, and the DLIs will cure the cancer once and for all. And, yet, I am haunted by these words, with which I am sure you are familiar:

Stopping by Woods on a Snowy Evening

By Robert Frost

Whose woods these are I think I know.

His house is in the village though;

He will not see me stopping here

To watch his woods fill up with snow.

My little horse must think it queer

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.

He gives his harness bells a shake

To ask if there is some mistake.

The only other sound’s the sweep

Of easy wind and downy flake.

The woods are lovely, dark and deep.

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.

PS: My wife just told me that the Spanish translation of the title of this post reads: "Once more into the ass, dear friends, once more!"

About Me

I have multiple myeloma, a rare, incurable, universally-fatal blood cancer. The average survival in 1998 for the newly-diagnosed was three years with conventional chemo, five years with a autologous bone-marrow transplant. Through a combination of diligent study and miraculous luck, I'm in good shape more nearly fourteen years later.

I've had just about every treatment medicine has to offer: chemotherapy, autologous transplant, allogeneic transplant from a matched but unrelated donor (a MUD), and a donor lymphocyte infusion (DLI).

I started blogging just before I was scheduled to have a second autologous transplant in early 2009, but there was too much cancer in the marrow. I was devastated. By November, my tumor burden was astronomically high: I had run out of time.

So I gambled on the rare and dangerous allogeneic transplant from a matched but unrelated donor, which is when I began this blog in earnest, but after a month I couldn't blog because I had become so weak I couldn't lift my hands to the keyboard. I was hospitalized for nearly three months; nearly died three times; and I continue in recovery more than a year later. My wife was once told to make "final arrangements" for me.

I wanted especially to describe my struggle with fear. Fear often leads to bad medical decisions: its acid eats away ones quality of life. Fear leads to too much treatment too soon, or to treatment too long delayed. I hope to explain the tools I've developed to neutralize it. I am writing a book on the subject which I hope to finish before I'm financially destitute: who plans to retire at age 53?

Along the way I'll try to provide the context of my life inside of which these tools work. Also, I can't resist the occasional digression.